Archive March 2019

Rare immunotherapy side effect

We met with our oncologist to talk about my husband’s bone marrow biopsy results and lots of recent blood work! He has two serious but normal immunotherapy side effects and one crazy rare side effect. End result is, of course, high-dose steroids (and also beta blockers to lower his racing heart rate). But I thought I’d put down these side effects here since I hadn’t seen the bone marrow failure one on MPIP when I searched. If somebody else someday faces this, hopefully they will find this post.
1. Hyperthyroidism . Believed to be causing the fatigue and racing heart. Beta blockers to lower heart rate. Also a referral to an endocrinologist. This just popped up this week in the blood work.
2. Liver inflammation/hepatitis . Being treated with high-dose prednisone over the next two weeks. Also a referral to a liver specialist.
3. Panhypoplasia/aplastic anemia (bone marrow failure) . This is a really rare side effect. Only a couple case studies of 3-4 patients who’ve developed this. But of course my husband got it! And he was even on low-dose ipi! The hope is that the high-dose prednisone and no more immunotherapy will resolve this. But he’ll be getting weekly blood work as well as transfusions if necessary. If the blood counts don’t stabilize or improve, our oncologist has already made a blood specialist aware of my husband’s case and they’ll send my husband to the blood specialist for more treatment. This could be due to the immune system ‘attacking’ the bone marrow, or possibly the liver inflammation is causing it.
My husband has also recenty started to hear ringing and lose some hearing in his right ear. This preceded his original diagnosis of a 3 cm brain tumour. So he’s getting another MRI next week to check on his brain (he had one about a month and a half ago).
In the meantime he has lost three pounds in a week and is very sleepy. I hope the prednisone works its magic on him and also that the MRI next week shows some benign or immunotherapy-related reason for the hearing loss, and not another growing or new tumour.

MS & Pregnancy – Answering All Your Questions!

Over the course of the last several months I’ve gotten lots of questions on the topic of MS and pregnancy so I wanted to take the opportunity to discuss this important – yet rarely openly talked about topic.
While I am just one person with my own unique set of circumstances, I know that my situation as a “thirty-something-year old-female wanting a family” is relatable and therefore, aim to be open and candid about my experiences as possible. It’s helpful for me to hear from others so I hope me sharing is helpful to you too (let me know if the comments section!).
IMPORTANT : I want to make it clear that I’m not a medical professional and am NOT offering medical advice. My answers are based on my personal experience, my neurologist’s advice and the extensive research I’ve done over the years. Brief Synopsis of my Condition Diagnosed : January 2015 – 4+ years ago Symptoms : Sensory and vision only with one bout of optic neuritis Lesions : 20+ lesions in my brain; none in my spine as of 1/15 but getting re-checked for both in 5/19 (hence no physical symptoms) Medication : Tysabri, once a month IV infusion (not when pregnant) Neurologist : Dr. Dusan Stefoski from Rush University Medical Center in Chicago All questions below were submitted by my Instagram followers or emailed to me directly so I wanted to include them in a Q&A format to be as straightforward and specific as possible. Okay… now onto the good stuff. Let’s talk pregnancy! When are you supposed to get off of a medication if you’re trying to conceive or are pregnant?
This question is highly debated and you will hear different answers depending on which neurologist you talk to. Some say to stop meds 3 months in advance of becoming pregnant since it takes a while for the drugs to get out of your system, others say you should stop when you learn you are pregnant and now, some doctors say that you can continue certain medications during pregnancy (although this is rare).
What I’ve gathered is that every situation is unique and based on your own medical condition. You need to see if the benefits outweigh the risks of being without meds. If you’re someone who has noticeable symptoms that affect your quality of life, then yes, your doctor may recommend you stay on medication longer or continue during pregnancy. It depends on you and how you’re doing. But quite predictably, no one can say for certain how these powerful meds can affect a growing fetus so it’s safer to get off of medication as quickly as you can. Ultimately, you need to balance what’s safest for you and the baby and go from there.
For me, I stopped doing Tysabri once I got a positive pregnancy test. Because it took us so long to conceive and we had to undergo IVF, my doctors didn’t want me off a medication during that period. So we agreed the best compromise was to stop once pregnant and to resume immediately after giving birth. What are the potential risks of getting pregnant with MS?
Being pregnant means that you’re without medication which puts you at a higher risk for a flare up or relapse. While many doctors actually say you’re typically “protected” from these flares during pregnancy, it’s been scientifically proven that your chance of relapse within the first 6 months of giving birth goes up significantly – up 40% according to the National MS Society. In fact, post-pregnancy is when many women learn of their MS diagnosis as their symptoms have been mostly dormant and then flare up with hormonal changes post-pregnancy. Is there anything you can do to minimize your chance of a relapse?
In my experience, yes. Two things: Begin your meds up immediately – Based on the medication you choose, you are decreasing the likelihood of a relapse by 25-60% (every medication has its own efficacy levels). But, medications rarely start working immediately and usually take 3-6 months to get back into your system. IVF steroids in the short term – Since medications are not immediately effective, many neurologists will recommend Prednisone – or some kind of IV steroid – to compress your immune system following giving birth. I completed a 5-day IV dose of Prednisone beginning the day I delivered my daughter, Chloe, and thankfully did not have a relapse. I will do this again in a few weeks after I give birth. This photo was taken the day I gave birth to Chloe while I was undergoing steroids via IV. Gotta do what you gotta do!
Steroids helped in the short term and also allowed me a 3-month period to breastfeed since that was important to me. I was told that one 5-day dose of steroids would “protect” me for up to 3 months and would not harm my daughter when breastfeeding.
Steroids result in bloating, mood swings, feeling jittery and sleeplessness so I definitely wouldn’t recommend them as a “fix”. How long do steroids last / how many doses of steroids can you do?
Steroids are intended for short-term use only – whether you’re using as a fix for a flare up or short-term protection. My doctor advised not to do more than two doses in a row (so “coverage” for 6 months or once every three months) as my body would become immune to it and they would no longer be effective. Did your MS symptoms act up during pregnancy?
NO! I felt great from an MS perspective – with both Chloe and baby boy.
In most cases, like mine, MS symptoms are dormant during pregnancy and you’re actually supposed to be “protected” for 9 months. Pretty amazing, right?
While pregnant with Chloe I did get two new lesions on my brain but they were not activated and therefore, I luckily didn’t get any symptoms. I plan to get an MRI after I deliver baby boy so I’ll let you know the results.
While MS dormancy is typically the case, I’ve definitely heard of people having a relapse or flare during pregnancy although it’s rare. How did you and your neurologist decide on your treatment post-pregnancy?
The goal for us has always been to 1) minimize my symptoms and 2) reduce the likelihood of my MS progressing – all while weighing the consequences of the medicinal risks.
We ultimately decided on Tysabri after my diagnosis 3 years ago because we wanted to essentially ‘stop MS in its tracks’. I had 20+ lesions that had been there for a while and were never treated so we needed to use the most effective drug at the time to control it. Tysabri, however, comes with some scary side effects including PML (a deadly brain disease). This is terrifying but the risk of obtaining PM is so low to me (I am not JVC positive), so the benefits of the drug outweighed the possible consequences.
Now, 4 years and two babies later, there are other very effective options on the market – some of which are more convenient and possibly “better”. BUT we choose to continue on Tysabri because my body tolerated it very well (no relapses!) and I am still JVC negative. (If you’re positive, you still have two years to safely be on this medication but you need to go in for continuous blood testing as this can result in PML). So our thought process really was – “why mess with something that’s working?” Are there any “safe” medications for breastfeeding or trying to conceive?
I was told Copaxone – which is administered as a shot – was the “safest” for trying to conceive and even breastfeeding. However, the efficacy levels were so much lower than my current medication (Tysabri) that I decided against it. I would recommend asking your doctor for the latest and most update to date research on this. Did you breastfeed? Why or why not?
As a first time mom, it was important to me to breastfeed my daughter but I knew that that decision came with risks since you’d be off medication and at a higher chance of relapse post-birth. My neurologist and I compromised that I would only breastfeed for 3 months before I started on Tysabri, and undergo a 5-day dose of steroids immediately following her birth to protect me during that period. You can read about my breastfeeding experience with a Chloe here .
This time around I will not attempt to breastfeed for concern for myself and ultimately for my children. The risks are simply too high and my priority is to minimize my chance of relapse. I need to be my best physically and mentally to take care of my family.
Luckily, and quite unexpectedly, my cousin offered me her over-supply of breastmilk that she typically donates to a NICU clinic. Since baby boy will be only 34 weeks at birth and subsequently in the NICU, I graciously accepted her generous offer. Since premature babies haven’t had the ability to develop the same antibodies as full-term babies, I want to give our son the milk that has been proven to provide those. Huge thanks to you, TR. What’s your plan post-birth?
Immediately following baby boy’s birth, I will undergo 5 days of steroids again to try to avoid a relapse and then resume Tysabri within days of delivering. Need to get back on track and hopefully avoid a relapse. Any problems with undergoing IVF with MS?
I was super concerned about this but the direct impact wasn’t as bad as I thought.
To be honest, my biggest MS stressor is STRESS so when I feel stress, my body reacts. Undergoing IVF and dealing with infertility problems was by far and away the most difficult thing I’ve experienced and quite honestly, I’ve never felt worse mentally or physically. It just drains you (with or without MS!) so adding in that additional factor was hard. My body would often get numb – my arms and my hands – and I’d experience tingles all over. Fatigue and cloudiness (brain fog) were common too.
From a direct medication stand point, the only thing I couldn’t be on was Clomid – a common fertility medication to increase your likelihood of conceiving – so instead I opted for Letrizole. Ask your doctor about this too as it was a great alternative (even though it didn’t work for us).
In terms of the actual shots, retrieval or transfer process, NOTHING changes with MS and I wasn’t impacted. I was able to continue my monthly infusions of Tysabri during the entire process as well. Does MS affect your ability to conceive?
Well, this question is highly debated and i dont l think there is a concrete answer.
As discussed in my IVF series which you can start reading about here , my fertility doctor told me quite definitively that my MS had deteriorated the quality of my eggs. He said they had “aged” the equivalent of roughly 10 years (so I am 34 and said my egg quality was that of a 40-something year old) making it even harder for me to get and stay pregnant. Some people will question the truth behind the correlation and say there are no concrete studies to prove this theory – and I don’t claim to have physical evidence of this – but I will say that my IVF experience aligned with his theory. Let me explain.
During my egg retrieval, we got 12 eggs (a pretty decent amount) but of those 12 – 8 of which made it to 5-day embryos – only 3 (!!!!) were viable. That means that 5 of our fully developed embryos had a chromosomal abnormality and wouldn’t result in a healthy or normal child. At my age, that number should have been closer to 20% – not 60%. This aligns exactly with the results of someone in their mid-forties, not thirties. Did your neurologist recommend that you freeze your eggs after your diagnosis?
No, but I wish he did.
(Before I elaborate, I want to point out that I’m by nature a Type-A planner that doesn’t like “taking things as they come”. I prefer to be calculated and reduce the pressure, but this definitely doesn’t mean you should! It’s a matter of YOUR comfort level – not mine.)
Okay, this question goes back to whether MS affects fertility but it also has to do with general life pressure and stresses. The truth is, if you’re not in a rush to have babies but know you want to some day, I say FREEZE YOUR EGGS! Why put unneeded stress on your self if you have the ability (and financial capability) to do this? Is minimally explore the process and cost with a fertility clinic (why not learn more?). Whether I had MS or not, I – as anyone! – was most fertile in my twenties and as I aged the number and quality of my eggs went down significantly. It’s not to say that you CAN’T get pregnant but the likelihood of getting pregnancy as easily or quickly is significantly reduced. As you age, the quality of your eggs deteriorate which is why miscarriage rates are so high nowadays. People are getting pregnant later in life and some of the viable eggs are missing chromosomes or are blatantly abnormal which will not lead to a normal pregnancy.
My best advice would be to look at your situation holistically – based on your goals, short term and longer term, your financial situation and personality type / comfort level – and figure out what’s best for you. Only you can make that call. Ok, well that’s it! I hope you found this helpful. If you have any other questions you can reach out directly.
— Do you know of someone with MS that’s considering conceiving or currently pregnant? Please forward them this email or sign them up for my blog here – subscribe on the sidebar. They can also follow me on Instagram here where I often elaborate on my MS journey. I’ve found that being apart of this MS community, sharing information, experiences and learning from others has been incredibly helpful and gotten me through my diagnosis. I know many others who share this sentiment so please share. Follow along!

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Started Remicade after Humira

Friday was my first loading dose of Remicade. Everything went well with the infusion, no pre-meds and I had no side effects. It will be a while until I can tell if it’s going to work since I am still on 40mg of pred.
Things went really south for me in February after I was switched to weekly shots of Humira (lots of blood, 10-15x/day all diarrhea, urgency) and after not being able to get a bed at the hospital for IV steroids (I would have had to “board” in the ER and there was no way i was doing that) the doc tried me on 60 mg of pred which was a miracle worker. I’ve been tapering 5 mg every 5 days and look forward to getting off of it (side effects of elevated blood pressure, severe muscle weakness, and my blood glucose is so high that I am now in the diabetes category — I think PCP is going to want me to be on meds for that).
I had a 2nd Humira level check after I was on weekly dosing a month. Prior to the increased dose the levels were low (1.6) but no antibodies. The 2nd check the levels were slightly higher (2.1) but still far too low. But what shocked me was that I had high antibodies (30 with optimal being less than 10).
Does that mean that I may also develop antibodies to Remicade? Will the prednisone help prevent that for now? I can’t take azathioprine (high LFTs) so not sure what I could do lower the chances of the antibodies.
Feeling good right now with the UC … stools are always formed, no urgency, haven’t seen visible blood for over a week, 3-4 BMs/day — almost back to normal. I want this to continue for years!!!

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